Elizabeth’s Story

Crossing the Country for Community

Elizabeth (she/her), a writer, was living in Florida and struggling to find resources and support for her multiple disabilities including Ehlers-Danlos Syndrome (EDS), a genetic tissue disorder with which she had recently been diagnosed.

“One place told me that I was not disabled enough to qualify for services. And I just remember thinking, what does that even mean? How do I not even fit into my own community?”

[Visual description: Snapshot from Impact Report that features Elizabeth’s photo in a circle on a blue background with green and white decorative dots. Elizabeth is a white middle-aged woman with blond bangs.]

At the same time, there was political backlash and discriminatory policies being enacted against people who are LGBTQ+ in Florida, and Elizabeth was feeling increasingly uneasy as a disabled bisexual woman.

“I thought, where can I safely live as a disabled bisexual person who is on Medicare, under age 65, with a rarely diagnosed disorder?”

After much research, Elizabeth chose Washington state for a number of reasons. It seemed more inclusive and had better options for EDS medical care, as well as an EDS peer-support group. She also found Disability Empowerment Center and reached out to see how the organization could help.

Staff at Disability Empowerment Center helped her find a housing provider in Seattle that she qualified for as a Section 8 housing voucher recipient. This helped relieve some of Elizabeth’s anxiety about how she would secure safe and reliable housing in her new city while still in Florida.

But because of complications with her move-in timeline, Elizabeth had to start her cross-country journey without a move-in date or keys to her new home secured. Knowing she had a resource in Seattle, she got on the Greyhound bus to begin the long four-day trip.

“The only reason I had the courage to do that was because of Disability Empowerment Center,” she says.

Now settled in after moving into her new place last fall, Elizabeth is pursuing other goals with help from Disability Empowerment Center staff. One of those goals is to return to writing and ultimately apply to Hedgebrook, a women’s writing center on Whidbey Island.

“It’s such a healing process to feel heard and seen and not be penalized for asking for help,” she says. “I don’t feel alone knowing that Disability Empowerment Center is there. I felt very alone as a disabled person in Florida for years.”

Elizabeth is enjoying living in a community that feels safer and more inclusive—and where she feels like people know what ableism means. She is also learning how she can advocate for herself and other people with her rarely diagnosed disability.

“That’s what Disability Empowerment Center feels like. It’s a place where we can go for help, to learn to help ourselves—and then pay it forward.”

Resources:

Connective Strength EDS Support Group (Seattle area)

Learn about EDS through the EDS Society